And other cynical, profanity-laced yet heartfelt responses to the death of my baby

Tuesday, December 8, 2009

Names and Light

It's been on the calendar since September; I know, because our photo and written submission were due October 1. And yet, it was just last night when Bella asked what was going on this coming weekend that I realized Sunday night is the annual worldwide candlelight service for children who have died. Per usual, sponsored by Compassionate Friends, and for us, hosted locally at Children's.

For those who haven't been reading since inception (and who can blame you?), the first year we went to this it was . . . rough. It was rough thinking about going, and in the end we were stood up by family members -- the first of many schisms abysses to appear in the relationship we have with extended family.

But. I decided it would make me feel better, and less lonely, and even my load so to speak, if I carried in my coat pocket the names of all the children I know who have died. And you know? It did. And I did it again last year, when Bella and Mr. ABF were kept home with a bilateral ear infection and I went with my Aunt and Uncle. And again, as I absorbed the names and faces of the children in the program in front of me, I silently clutched my stack of names, knowing I wasn't alone in this. None of us are alone in this.

We're planning on going, barring a last-minute massive ear infection for any of us, and again I'd like to carry my names with me. Please note: these names are NOT part of the service, they are not read aloud. I write them down on a piece of paper, and all of the names come with me in my pocket where they keep me company and the palm of hand nicely warm. At our service, they read the names and show the pictures of children who have died at Children's -- some going back before the year I was born, back when fire was invented. Everyone holds candles that look amazing in the frosty winter night, and the grief seems to dissipate skyward into the black. When I return home, the names all go into a bowl next to a candle that is lit nightly until my Christmas decorations overwhelm it all. (Or the cat threatens to dump everything on the floor. Crap happens in this house.)

I love saying the names of your children as I write their names, and put them altogether. There are far too many, and yet it makes me feel so much less alone in my grief and missing.

If you'd like for me to carry your child's name with me this year, please leave a comment with the name. If you'd like me to use a real name and not a blog pseudonym or you'd like to keep this otherwise private, please feel free to email me at tashabf at gmail. As always, I carry the names of children I gathered from my first year doing this, so it's highly likely I already have yours written down, but a reminder and double-check are always welcome.

And please, feel free to light a candle at 7:00 p.m. your time on Sunday, and join in a wave of candlelight remembering Maddy, and those who made impressions despite their short lifespans, earthside or inside.

He's not my child - but he was my older brother - born 2 months too soon in a time without artificial surfactant; my mother never got to hold him (she'd developed a fever, they whisked him away to another hospital with better equipment, and wouldn't transfer her until she was fever-free, which was after he passed), and there was no funeral for him. How she got over that to then have me, 2 years later, also 2 months premature (incompetent cervix, anyone?), I'll never know. As an aside - any medical condition with the term incompetent in it is just salt in the wounds, if you ask me. She had many losses (at least 4 that I know of, 2 after 24 weeks gestation). It's just me and my sister who made it.His name was Chad; he was born on the 4th of July 1974; I wish I'd been able to know him.

Oh Tash, I remember when you began this, I had just started reading. I was amazed then, and still am, at your sweet heart. I am so glad this simple act brings you comfort and also gives it to those other families. I'll be thinking of you all on Sunday.

Oh, Tash. Thank you so much for this. Actually, on the evening of the first service you went to, we were in the hospital, waiting to birth our daughter who would never take a breath. So this would be a huge honor...to share room in your pocket with all of the other lost babies...

I'm a new cyberstalker--er--reader of yours. I don't know exactly how I came across your blog other than aimlessly searching on the internet for the writings of people who felt my pain. But I immediately connected with so much of what you said and how you said it. Thank you for not holding back! I spent hours over this past week reading your blog from 2007 to present (including comments; you have a great bunch of ladies following your blog). I felt your deepest pain as you shared moments of your journey.

I actually have a 3-year-old son, and my daughter was due to be delivered via c-section on 11/4/09. Exactly one week before that I went to the hospital for decreased fetal movement, thinking they would monitor me, tell me everything was fine, and send me home. Instead, Addison was delivered the next morning, 10/28/09, and after an EEG and brain MRI, she was diagnosed with severe hypoxic ischemic brain injury (cord accident, so it appears). It was amazing to me that a baby with no reflexes (no blinking, no swallowing, no gagging, no eye dilation) could breathe on her own (never mind the fact that a virtually brain dead baby could score a 10-minute APGAR of 8...but that's a rant for another time). And so it came to be that we took Addison to hospice to die. Addison was born in a virtual coma-like state and remained that way until she died exactly one week later on 11/4/09.

Perhaps it's the similarity of us both having a 3-year-old at the time of the loss, myself being of "advanced maternal age," my lack of religious afiliations, the fact that my daughter lived 8 days, or my own propensity for 4-letter word usage that drew me to your blog. Okay, or maybe--just maybe, it's the fact that you're a damn good writer and put it all out there for us to see. Anyway, I'm glad you did, because it gives me a possible glimpse into my own future. Maybe I'll find joy again some day after suffering this horrendous loss.

I guess what I'm trying to say is, would you please carry the name of my sweet daughter with you on Sunday? My husband and I plan on attending our first Compassionate Friends meeting on 12/16, and plan on going to our local candle lighting ceremony. But if you would add Addison to you collection of scraps, it would remind me that your blog is no more a work of fiction than was my own pregnancy and delivery, even if I now have nothing to show for it but a shelf under my belly button, a box of cremains, and a stack of condolence cards.

I cried when I read about your little girl. How awful that must be, ugh, I'm so sorry. Anyway, I came across your blog somehow, and now I'm following you :) Just want to connect with other moms. I recently started a blog for moms, hoping to collect information and advice. Feel free to check it out.www.balancedmoms.blogspot.com

Thank you so much for doing this. I would be honored if you would remember my brother Joey, who died at 4 years due to hypoxic brain injury at birth, and my cousin Stephen, who was born at 7 months and lived 6 hours.

Oh Tash,As if the reading of this wasn't enough to wrench my gut, but going through the comments and reading each little ones name, many I 'know', some I don't, it still just breaks me. I sometimes think I am a seasoned(read hardened) vet of all this db stuff, but this, this list and your willingness to hold close for these days the lost hopes of so many, it reminds me, how close to the surface and now spilling over the surface, the tears are.I would love it if you could tuck Caleb safely into your pocket for me, it seems a perfect place for his memory to be right now.xxoo

This is my first time posting anywhere about this but I have been reading around for awhile. I would be truly touched if my son Duke (stillborn at 31 weeks in June, no known cause) could be remembered.

I love that you do this, Tash. I meant to get on and email you my children's names rather than just letters, but I forgot, which actually is so telling of where I am at right now in terms of wanting to "remember" them. Maybe next year.

He's not my child - but he was my older brother - born 2 months too soon in a time without artificial surfactant; my mother never got to hold him (she'd developed a fever, they whisked him away to another hospital with better equipment, and wouldn't transfer her until she was fever-free, which was after he passed), and there was no funeral for him. How she got over that to then have me, 2 years later, also 2 months premature (incompetent cervix, anyone?), I'll never know. As an aside - any medical condition with the term incompetent in it is just salt in the wounds, if you ask me. She had many losses (at least 4 that I know of, 2 after 24 weeks gestation). It's just me and my sister who made it. His name was Chad; he was born on the 4th of July 1974; I wish I'd been able to know him.

You Know, For the Kids

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About Me

On February 12, 2007, my daughter Maddalena (Maddy) was born. After 12-14 prenatal ultrasounds -- most for non-baby related issues like a rather scary subchorionic bleed and low-lying placenta -- and a clean amnio, we were nothing short of ecstatic upon the arrival of our beautiful, 6 lb. girl. The docs decided to move her to the NICU overnight for what appeared to be breathing issues related to meconium intake. And then the wheels came off the bus. And the bus spun out of control, and hurdled off the cliff, causing our chests to decompress and vomit to rise in our throats, followed by the bus blowing up, sending shrapnel into our eyes and making our skin melt like that guy in Raiders of the Lost Ark . . . . where was I? Oh yeah. Maddy was moved to Children's Hospital, and died on Feb. 18, 6 days old. She is survived by her mom [waves hand], her dad (aka, Mr. ABF), and her big sister Bella. Be prepared for discussion on infertility, ART, grief, toddlerhood, wine recommendations, recipe queries and dog training. Oh, and genetics. And I don't know boo about genetics, so this ought to be really entertaining.